In it I aimed to clarify terms that are often used incorrectly or even casually by the public and the media. Numerous recent news stories–such as that of the passing of former Israeli Prime Minister Ariel Sharon–have invoked these clinical terms. Among the most gut-wrenching of these recent stories are the Marlise Muñoz case from Fort Worth, Texas, and the Jahi McMath case from Oakland, California. I have received a lot of feedback regarding my January 12th post, so I’d like to expand on this important subject further. In today’s post, I briefly review the background of these two cases and bring in the expertise of a world-renowned medical ethicist to weigh in on how brain death and our understanding of it may affect their courses and outcomes.

The Muñoz case involves a pregnant 33 year-old woman who collapsed following a blood clot in the lungs. Reportedly Muñoz is now brain-dead, though as of this writing I have been unable to find documentation of a physician or hospital spokesperson officially and publicly announcing that she has been declared brain-dead. The health status of the fetus is not clear. Muñoz’s husband, Erick, has requested that mechanical ventilation be terminated, in keeping with what he strongly believes her wishes would be (both he and his wife worked as paramedics, and he states that she had made her wishes very clear to him regarding what she would want in such a clinical setting). However, the hospital where Muñoz resides has declined to do so, citing a Texas law prohibiting the withholding of “life-sustaining treatment” from a pregnant woman. As I understand it, this Texas law is intended for pregnant women who are comatose, not brain-dead. Muñoz’s husband has now filed a lawsuit against the hospital. The central issues in this case are whether Muñoz is in fact brain-dead, and the degree to which a hospital may or may not have the right to operate against the wishes of the spouse given the pregnancy.

The McMath case involves a 13 year-old girl who underwent nasal and throat surgery–including a tonsillectomy–as surgical management for sleep apnea. She suffered cardiac arrest post-operatively, and according to hospital spokespeople she subsequently has been declared brain-dead–and therefore clinically dead–by several independently-evaluating physicians. As such, the hospital released Jahi’s body to the coroner, who then released the body to Jahi’s mother. At the center of this impassioned debate is the question of whether or not Jahi is dead. The McMath family’s attorney, Christopher Dolan, reportedly said in an interview that Jahi “has not passed. Her kidneys function, she regulates her temperature and her body moves now more than ever. This is a real human being, not a dead body.” Jahi’s uncle, Omari Sealey, reportedly has told interviewers that he hopes “to have her come back home with 100% full recovery.”

These are heartbreaking situations, clearly, with no simple answers or methods of resolution. So yesterday I spoke with my former teacher and mentor, Dr. James Bernat, professor of neurology and medicine and the Louis and Ruth Frank Professor of Neuroscience at Dartmouth’s Geisel School of Medicine in Lebanon, New Hampshire.

Dr. Bernat is a well-respected clinician with a scholarly interest in ethical and philosophical issues in neurology. He is extensively published in the discipline of medical ethics; his textbook, Ethical Issues in Neurology, is widely considered a seminal publication in the field. He has particular expertise in impaired consciousness, including brain death and the vegetative state, and has provided guidance, testimony, and consultation for many organizations regarding these topics over the years. On a more personal level, Jim is just a great guy, one of the most caring, compassionate instructors I’ve ever had. It’s an honor to call him my mentor and friend.

(Here’s a grainy old photo of us at an Academy meeting, back in the day.)

Dr. Bernat was kind enough to provide his thoughts and expertise regarding these two complex cases.

MC: Jim, do you get a sense that people in general have a firm understanding of what “brain death” really is and what it means?

JB: Most people do not understand the concept of brain death. They regard it as a metaphor for severe brain damage causing coma but fail to understand its totality and irreversibility, and particularly do not realize that it represents a medical and legal standard for death determination in the United States. The public press compounds the confusion when journalists who also do not understand the concept discuss “brain death” incorrectly and confuse it with coma and the vegetative state.

MC: As a neurologist, my concern is the confusion that may arise when the public hears in the media terms like “life-sustaining treatment” and “life support” when referring to a brain-dead patient receiving mechanical ventilation and medications. Could you speak to this concern, and are there better, more accurate terms you would suggest the media use?

JB: In the context of the brain-dead patient, the use of the term “life support” to refer to tracheal positive-pressure mechanical ventilation is seriously misleading and further confounds the question of whether such patients are alive or dead. The medical and legal standard of brain death means that the patient is dead so the ventilator or other treatments should not be referred to as means of “life support.” I prefer the term “physiological support” or simply that the dead patient’s respiration is being provided entirely by a machine which thereby permits their heartbeat and circulation to continue.

MC: Every American state has its laws defining death. As I understand it every American state defines death as either complete and irreversible cessation of cardiac and breathing functions or complete and irreversible cessation of brain and brainstem function. Therefore, state law defines brain death as equivalent to the actual death of an individual. What can be done and recommended in situations in which one’s individual opinions or religion differ from state law?

JB: Your understanding of state law is correct. Each country adopts a unique perspective to this problem. In the United States, where our traditions emphasize respect for religious beliefs, enforce the rights of the individual, and promote the value of a pluralistic society, we allow states to amend their death statutes or their department of health administrative regulations to provide a religious exemption to declaring brain death. Currently, New Jersey and New York have chosen this route. In these states, in the presence of a qualifying religious exception, physicians must use the circulatory-respiratory tests for death. Some scholars have advocated even more personal choice over the standards for death determination but I fear that this proposal would yield chaos in hospitals.

MC: The news reports pertaining to these two tragic cases often refer to state law and hospital policies. If you could communicate directly with state officials and physicians caring directly for these two individuals, what clarification would you ask for to assist in a better public understanding of their situations?

JB: Hospitals are constrained about how much specific patient medical data they release to the public by HIPAA regulations and by their internal risk management-legal advice. The dearth of specific information complicates the role of commentators because they lack a clear and complete understanding of the facts of the case. Additionally, when hospitals’ every decision or statement is exposed to public scrutiny by an interested press, it is understandable that they become cautious in their decisions and public statements. Despite these constraints, the public relations aspects of the cases require optimal management to provide sufficient facts and clarity for commentators and the public to understand the reason for their actions. These facts include the diagnosis, how the diagnosis was made, whether brain death was formally determined, and the reasons for the hospital’s actions in each case.

MC: What else can be done to ease the suffering of the families of these two unfortunate people?

JB: These are both tragic cases of young people who died from massive brain damage. As a parent, I cannot imagine the extent of suffering that these tragedies caused to their loving families. In addition to taking every measure to inform and comfort such families, I strongly recommend offering the opportunity for organ donation. Although some may criticize this approach as a predatory action, organ donation offers transcendent meaning to the families of brain dead patients. Numerous studies have demonstrated that families later emphasize how important and meaningful they found the donation process because it helped mitigate their suffering by creating good for the organ recipients from an otherwise senseless tragedy.

Long ago during my training years, a man in his early sixties—I’ll call him Karl—was admitted to our hospital service one day in mid-March. Karl had metastatic cancer, and he was dying. We on the in-service team liked him very much, remarking quietly to each other how it so often seemed to be the good ones that die early of such tragedies. Despite his terrible prognosis and physical discomfort he was pleasant–jovial, even–during morning rounds, putting everyone at ease with his polite disposition.

One day we walked into his hospital room, and he was having a tough morning, though not for physical reasons. He was really down, uncharacteristically so. We asked him what was troubling him. A little embarrassed at first, he shared that it was St. Patrick’s Day, and true to his Irish roots he normally celebrated that day with a glass (or two) of green beer. Doing so was a custom of his and his family’s for decades. He told us how unfortunate it was that he wouldn’t be able to celebrate this way this time ‘round.

Upon examining him and talking with him further, we took our leave and somberly continued morning rounds. Afterwards I stood at the nurses’ counter with my chief resident. I was post-call and yearning for sleep, so I wasn’t paying much attention to what he was doing; I was hanging around until his exit off the floor, which was tacit permission for me to go home and go to bed. He made a couple brief phone calls and wrote something in a patient chart. He slammed the chart shut, startling me, and grinning widely he proclaimed, “That oughta do it!” And he walked off, swinging his stethoscope in his hand as he disappeared down the hall.

I looked down: it was Karl’s chart. I couldn’t help it, of course. I opened it, flipped to the “orders” section, and read the following in my chief resident’s barely legible scribble:

After awakening from my post-call nap I called the floor and spoke with Karl’s nurse. He had enjoyed his green ale. Several days later he went to hospice a happier man.

That was a couple decades ago. I hear that beer is still available in some hospitals. But I wonder how difficult it would be for a dying person to get it these days. The process of health care is so burdened now with endless complexities—regulations, statutes, administrations, commissions, regulations, third party payers, boards, committees, and did I mention regulations?—it seems hard to believe that underneath all of that still exists the original idea that I went into medicine for in the first place: to actually care for people, to make what is miserable less miserable, to heal, to help make life a little better, maybe lengthen it too. All this sounds so quaint and clichéic now, things one might say in a medical school interview. But isn’t it still true, what we’re all still supposed to be doing in health care? If so, does the administration of health care now really have to be such a struggle, such a fight all the damn time?

To some of those non-clinicians who have their hands in the business of health care, I would ask what they would do if charged directly with the task of making a person’s life better. What rules that they themselves created would they try to bend to grant a dying man a green beer? Or would they? A green beer would be difficult to pre-authorize.

As my life continues on, I am increasingly grateful for what I have, who I have it with, and what I am allowed to do every day for work. I think of Karl every St. Patrick’s Day. To my readers, if you choose to celebrate a little tonight, I’d appreciate your lifting one up to Karl and cheering the greatness of life. We’re lucky to have each day we have.